Tuesday, June 14, 2011

Feeling pretty amazing at the minute ... words can’t describe the freedom & how it feels.For the first few days my brain wonders whats going on ... Pain free and moving hmmm this is new !!

3 weeks later .....

Feeling flexible and pain free. Friends have noticed a huge difference especially my energy level’s which have reached an all time high. I’m doing so much these days I’m on a roll my brain is working overtime and my idea’s for the Young Arthritis Network are flowing .... Hmmmm I’m liking this new me !!!

I nervously place my pointe shoes on and go onto pointe gaining more confidence I begin to dance and my body moves in a beautiful elegant way like the way it should unlike previous attempts. The beauty of dance I drift away into my own world – Best feeling !!

4 weeks later...

Should I jink myself ...

I’ve felt pretty much pain free for the past few weeks ... I feel so good that I wondered what was wrong??OK I’m not a negative person & this may sound crazy but hey that’s never stopped me admitting things before so a million possibilities cross my mind.

Sunday, May 22, 2011

Have you heard of Jeffrey Gottfurcht???After reading this you’ll never forget the name.

On 14th of May 2011 Jeffrey Gottfurcht reached 30,000ft to the TOP OF THEWORLD Mt. Everest but this is not what makes him unique on May 14th he became the first person with Rheumatoid Arthritis to reach the top of Everest.

Everest is like the Olympics of climbing, which many sportspeople aspire to reach. An uphill battle & a challenge many will never attempt but not Jeffrey Gottfurcht. He didn’t let RA take him down nor did he give up on something he loved instead this man did the unimaginable he went above and beyond to the top of the world.

The road to Everest is tough it requires many years of training according to Ian Taylor the youngest Irish person to climb Everest .The statistics are not exactly positive with 1 person in every 10 who make it failing to return. As one moves from base camp 1 to 2 to 3 to 4 oxygen levels decrease and Ian Taylor describes a basic task as difficult a simple walk across the room can take up to 5 minutes (sound familiar??). At altitude our body becomes weaker we are exposed to risks such as acute mountain sickness, pulmonary edema, ataxia, blood clotting and the list goes on so for a person with RA to undertake this challenge in my opinion is nothing short of amazing.

I don’t have to tell anyone that living with arthritis can be a struggle. It’s not easy we’ve all had mornings when our body won’t allow us to leave our bed let alone move an inch so when I heard a guy with RA was going to take on Everest I honestly thought it couldn’t be true. Instead of looking at his disease as barrier he thought of it as a challenge to overcome. The sheer challenge of Everest is unimaginable just think climbing as oxygen levels decrease, the body becomes weaker it slows down but top this with RA challenging is an underestimation.

So his motivation behind this trip a selfless act to make a difference to the lives of children with Juvenile Arthritis by raising awareness of his charity the Jeffrey Gottfurcht Children’s Arthritis Foundation a make a wish foundation for children with JA.

Some people are born to make a difference & this man is definitely one – a modern day superhero. One man has broken down barriers & given hope to people worldwide with RA . He is an amazing advocate, one which the arthritis community is proud to have.

On a personal note I’ve followed this journey closely & when I found out Jeffrey had reached the top I’ll admit it I cried & cried with happiness. To say it’s touched my life is an understatement it’s done much more than this it’s given me hope that my dreams are achievable now more than ever & if I work hard I’ll achieve them.

Jeffrey from the Young Arthritis Network we salute & thank you ...What an incredible journey.

“There are no borders, no limits and no frontier. Just keep moving, and do exactly what you set out to do.”

Wednesday, May 18, 2011

This week, I had my visit to the Rheumy for my routine check up as the days approached I began to think of how far I’ve come.

In the overall scheme of things I’ve done more than I ever thought was possible. Each day I push myself to be the best that I can be. Don’t get me wrong there are certainly times when I throw a total diva strop about having to do those evil injections & about arthritis in general but for the most part my mission is to live life to the full.

So as the appointment date get’s closer I begin to evaluate the past few months. I always write a list of questions that I would like to ask & like most people I glance at the calendar to see how I’ve been feeling.

In my mind I built a big picture of how fantastic I feel & I’ve even managed to erase the bad days from my mind. Looking at the evidence in front me I had no option but to face up to reality I’ve my fair share of bad days. My mission - to go into my Rheumy with three little words "I’m doing great" but unfortunately that won’t be today.

“We must rediscover the distinction between hope and expectation.”
~Ivan Illich

Heading to the appointment I build myself up I’m not sure what I'm expecting but after my appointment I feel deflated.In my mind I went thinking as I always do with that expectation that my Rheumy has all the answers including the one whereby I receive the magic potion where I’m free from arthritis.

No matter how many time’s I’ve seen my rheumy over the years I still leave disappointment and please don’t get me wrong my rheumy is fantastic he’s given me a new lease of life but I always leave feeling deflated.

I ask myself why I fell like this? Is it because for many years I was told I would grow out of JA ?Do I expect too much?Or maybe I forget my rheumy is not god he doesn’t have all the answers or at least the one I’m looking for the big C – Cure .

Sunday, April 17, 2011

It’s been a crazy couple of weeks but crazy in a wonderful way. Last week myself & Ann Marie Brennan got to head down to Spin 103.8 Dublin’s trendy radio station. We got a fantastic opportunity to hit the airwaves and create some awareness of our invisible disease Rheumatoid Arthritis.

A mixture of excitement and nerves on our way to the studio. I’ve done a few media interviews but Spin 103.8 is the station that many of my friends listen to so the pressure was on. I know many of my friends listen in at work so I was feeling a little nervous.

We arrived into the studio to meet Jonathan & Claire on their daily talk show “The Spin”. We spoke into what can be described as the microphone from the Band Aid video and before we knew it time had flown by and we had finished our interview. If you missed us on the show last week don't worry here's your chance to listen .See below :)

After the interview someone asked me why I do interviews? The answer took me by surprise you see to me it obvious . I’ve lived with a disease that while people heard of Arthritis they know very little about it or the impact that it has on the lives of the many young people. For many years I felt alone that I was the only young person to have arthritis and if I wasn’t the only one where are these so called “young people” their not in the clinic when I see my Rheumy , their not at my physio sessions so where are they?? In fact do they exist?? 14 years after my diagnosis I met the first person my age with arthritis so why do I do this because I never want any young person to feel alone ever again. I want each and every person who’s diagnosed to know the Young Arthritis Network exists & they are not alone .

Tuesday, March 15, 2011

Am I living the life I want ? If im honest I feel like I’m missing out on living the life of an average 20 something .. So I’ve asked myself why am I not ? Is it the illness or is it me?? The answer it’s a mixture of both.

What’s stopping me ?? I’m tired sometimes when I’m in pain I lose the get up & go which if left it becomes a routine. I’ve had arthritis for so long sometimes I naively think I know it all in relation to my own health but I fall into the trap of “ I CAN’T” so I decided enough is enough.

Anyone who is “stuck“ in a routine whether they have arthritis or not will become tired & bored so I’ve ditched my old lifestyle & begun changing things that I can’t do.

I’ve become interested in positive psychology & how this can benefit someone with a chronic illness. I’ve surrounded myself around positive people and I’ve really noticed a HUGE change I even notice a difference in how I analyze things. Is something really impossible? Why is it impossible? What can I do to get to where I want to go ? So now my end result to quote a very famous builder “ Can we do it? Yes we can”

So to bring this into perspective how can this affect my life & my health?! I’ve looked at a few area’s which on a daily basis affect me….

I CAN’T do this because ….

Problem A:

I can’t do the shopping because it’s so heavy & Im tired …..then when I get home I’m simply exhausted so I call the local take away.

So Monday I went shopping & over came my fear of grocery shopping. I struggle to do the weekly shop so usually I pick up a few bits on my way from work because I can’t get carry the bags or lift the basket. So I got a trolley which I filled up with loads of fresh fruit, veg ,& fish. After I checked it out I also overcame the second obstacle & asked one of the shop assistants would they help me bring it to the car which was no problem at all.

Ohhh I felt some level of achievement by Friday I had cooked a healthy meal each evening. I also picked up a few healthy snacks because I knew I had a busy week ahead so I avoided snacking or becoming over hungry and calling for a take away. By Tuesday I had soooo much more energy but I also knew that Wednesday I wouldn’t be home until 8 so I make a super yummy curry for the following day .

Problem B:

I CAN’T do exercise it hurts my body… well I haven’t the time by the time I get home I’m so tired and then it costs a fortune to join the gym. So join a class ? Well em I’m too afraid to go to an exercise class because of my limitations.

Enough is enough this excuse is rubbish even if I do say so myself…. Let’s get to reality here I’m never going to be a gym freak it’s soooo not for me but I can get fit & healthy which is what I wanna do.

I’m tired well duh of course you are who wouldn’t feel tired when your lazing about on the couch watching tv- my arthritis has nothing to do with this.

So what can I do to change this? Split up the exercise into mini sections I’ve split walking into two parts 3km to work in the morning & 3km on the way back.

I really wanna do yoga class but I don’t think I’m strong enough just yet so I asked my physiotherapist to help me out she suggests I buy an exercise ball to help build up my muscles etc….So off I went to buy an exercise ball.

Guess what before dinner is prep’d or while it’s cooking I’ve managed to do 30 min of exercises each day for the past two weeks it’s helped I’ve done it all before soaps start & I’ve blasted a few tunes out to keep the motivation going.

Next week I plan on going swimming initially I would like to go once a week. So I’ve arranged a swimming buddie so I'll have more motivation to actually go.

By making both of these changes it’s made such a difference to my life over the past two weeks. I have sooooooooo much more energy in fact for the first time in a very long time I feel ALIVE in the sense I could do anything. I’ve noticed I’m in less pain now I’ve still got pain but I have noticed a reduction.

So with all this energy I was able to spend more time living the life of an average 20 something year old.

Monday, February 14, 2011

Valentine's Day the day to buy cards and presents... but for me Valentine's Day represents something else. Each year all I want is to spend quality time with my other half most of my friends think I'm crazy when I say that I really and truly do not want a present.

All I want is time to be with my boyfriend because time is precious anybody with any kind of long term illness will tell you that quality time with a loved one whether it be your partner , family or friends is valuable. When you calculate all the time we've lost either because of fatigue or illness it can really stack up and sometimes I feel like I'm missing valuable moments because there is no where I'd rather be than by his side but this is not always possible.

So each Valentine's Day myself and my boyfriend make a point of spending the day together doing something we both love for me is worth it's weight in gold. It gives me chance to feel "normal" to forget all my worries and become carefree for just one day. Valentine's Day is also a day when I let my boyfriend know how much I appreciate every little thing he does . All to often we take the little things our loved one's do for granted it becomes the norm and we forget to say a special thank you to those whom we are closest.

I know my boyfriend has had a sacrifice certain things because I am unable to do everything but he never complains about it in fact he is one in a million a true selfless person.He gives me so much without even knowing it.

Tonight I am going to go home and tell him how much I appreciate the little things and how much I truly love him because I am not the only one which this disease affects and too often it's something I forget.

When it all boils down to it Valentine's Day is not about material things it about spending quality time with a loved one and making the special person in your life feel one in a million.

Sunday, February 13, 2011

I’m tiny coming in at just under 5 ft so heels should be really be my best friend but it fact the are my worst enemy. Well actually I tell a lie we have a love hate relationship.

Let’s talk about the love …..

I am a shoe queen there is no doubt about it …I can’t walk down Grafton street without stopping in Fitzpatrick’s , BT or Aldo for just a “quick peek”which usually involves spending about an hour going ohhh ahhh and planning how I am going to spend my next pay packet. My collection as I like to call it holds every type of shoe imaginable. I often spend my lunch time in work looking at fashion websites looking for shoes.

Now for the other side of my obsession …

As you may be aware I have arthritis in pretty much every joint so this poses three problems

Heels make my joints ache not just the little joints in my feet but my hips & my back ... Heck let's be honest here it can even take a toll on my neck.

My feet range from a size 3 ½ on a good day to 5 ½ on a bad day. Lately I can’t fit my feet into my pretty little shoes. It’s beginning to bug me because I must keep several types, styles and sizes with me as I never know what size my feet will be.

Pumps, ballet , flat shoes etc… while they are flat shoes they also pose a problem as my feet are too swollen so I can’t fit into them.

When I’m out and about I usually resort to a good old comfy pair of runners…. Yep runners while they are comfy and spacious let’s face it they are far from attractive and quite simply they look awful with skinny jeans and dresses(Let’s not even go down that road).

I’ve now reached the stage whereby I plan my outfit around my shoes depending on how my feet feel which in itself is annoying because I can’t wear what I want and then when the swelling subsides the shoes are too big for me.

Now back to the love hate relationship ….

I had a little bit of luck recently I found a gorgeous pair of wedge heels actually I fell in love with them having spotted them on the fashionable Lisa who told me they were ever so comfy so off I went to purchase them and I haven’t looked back since. In fact I was away last weekend and received several compliments on my latest purchase. It’s amazing the confidence a pair of heels can.

I love to buy shoes but it hasn’t registered with my brain that I can no longer wear fashionable shoes in fact I think my boyfriends sister has worn most of heels more times than I have.

I wish someone would design a fashionable range of shoes I’m sure most people whether they have arthritis or not would fork out a few extra quid for a comfy yet stylish shoes. So calling all shoe designers please please please design FASHIONABLE shoes that won’t cripple my feet.

Tuesday, January 18, 2011

Saturday saw the kick off of the ‘Let’s Dance’ workshops. Well I have to say I wasn’t disappointed. Upon arrival we had a chance to mingle over tea and coffee which was a great ice breaker. Our instructor Brian Redmond is a 3 times “All Ireland” ballroom champion, “All Ireland” show dance champion and he was also an “All Ireland” youth Latin American champion. He definitely understands the needs of dancers but I was worried he might not understand the needs of a person living with arthritis…. How wrong was I? From the second I arrived in the ballroom I was put totally at ease.

The class itself was designed specifically for people with arthritis and Brian himself was trained in arthritis management by a physiotherapist. He also told us that his dad has arthritis. I think both of these aspects really played a part in his understanding of movement and arthritis and definitely came to bear on how this class was designed. Some of the steps were even redesigned so that they are comfortable for a person with arthritis to do.

Brian taught us two styles of dance – Salsa and the Waltz. The salsa which is my personal favourite was fabulous! I left the class with the steps playing over and over in my head. I was surprised how quick and easy it was to pick up too. Brian breaks the dance down into the basic steps making it easy for anyone to learn. Once the music started playing, the class really got moving around the dance floor. The class was without doubt the right style and pace for people with arthritis.

Finally the class finished with the waltz. I was worried about this one given the traditional ‘hold’ puts a lot of pressure on the upper body. I need not have been worried however as the first step we were taught was an adjusted hold which is a lot lower, thereby reducing the pressure any one of the joints.

Before I knew it the class was over. So what was the highlight? The fact that I learnt to dance while exercising and I didn’t realize it – Now that’s what I call a genius idea!! In the cold winter months I think this will definitely be my preferred method of keeping these joints moving!

The ‘Let’s Dance’ workshops continue throughout the country. For more information, clickhere